Down Syndrome Guild of Greater Kansas City

The following is a list of local and national resources our members may find helpful in supporting individuals with Down syndrome.

LOCAL RESOURCES

Beach Center On Disabilities Through excellence in research, teaching and technical assistance, and service in Kansas, the United States of America, and globally, and through collaborations with those individuals and entities dedicated to the same ends, the Beach Center on Disability will make a significant and sustainable difference in the quality of life of families and individuals affected by disability and of those who are closely involved with them.

Cap4Kids is the Children's Advocacy Project of Kansas City. Within this site you will find a user-friendly, comprehensive listing of many social service agencies that exist to improve the lives of families that need our help the most.

Capper Center of Kansas City is dedicated to enhancing the independence of people with physical and developmental disabilities through the use of assistive technology.

Challenger Football League is about the entire experience and transforming disabilities into abilities and achievements. With the assistance of Football Buddies, Challenger players will run, wheel, throw, catch, and score as in all football games. Even though no score is kept, and this is a non-competitive environment, it is extremely exciting and fulfilling for all!

Coalition for Independence is a non-profit agency designates as a state of Kansas Center for Independent Living. We provide independent living services for individuals with disabilities and their families and caregivers in Johnson, Wyandotte and Leavenworth Counties in Kansas as well as the entire Kansas City metro area.

Children's TLC has been the premier preschool for children with disabilities in the Kansas City area for over 60 years. Our agency is a 501(c)3 non-profit agency providing educational and therapeutic services on a non-discriminatory basis.

Dream Works - The Dream Works is a full-line social service agency serving Kansas and Missouri. The agency is also a licensed home health provider. Our primary emphasis is on helping the aging and disability communities to maintain a lifestyle that makes sense to them, in an environment of their choosing.

Down Syndrome Health Care Guidelines were created to assist parents and medical professionals in treating patients with Down syndrome. Recommendations are provided for screenings at specific age ranges to promote health and well being in individuals with Down syndrome.

EFECT empowers families of children with disabilities by providing education, information, encouragement, support, and pathways to services. EFECT presently serves over 1200 individuals in the Greater Kansas City area and outlying communities.

The Family Conservancy is an organization that invests in families and children by delivering parenting and early education solutions, supporting families in crisis, and helping families overcome poverty.

Going to College contains information about living college life with a disability. It’s designed for high school students and provides video clips, activities and additional resources that can help you get a head start in planning for college.

Heartstrings Community Foundation is an organization that assist adults with developmental disabilities to develop vocational skills, develop adult friendships in the community and live self fulfilling and productive lives.

Kansas Infant-Toddler Services (ITS) is a comprehensive, statewide system of community-based, family-centered early intervention services for young children, ages 0-3, with disabilities and their families. The services are provided through the implementation of Part C of the Individuals with Disabilities Education Act (IDEA).

Kansas City Regional Center is one of 11 Regional Centers located throughout the state of Missouri. KCRC is an agency of the Missouri Department of Mental Health that provides service coordination, respite, first steps and referrals.

Lee Ann Britain Infant Development Center is a community outreach program of Shawnee Mission Medical Center provides vital support for children facing developmental disabilities. The center offers advanced therapy techniques to children, while providing support for the whole family.

Metropolitan Council on Developmental Disabilities serves as a grassroots advocacy organization for individuals with developmental disabilities and their families residing within the following Missouri counties: Bates, Cass, Clay, Jackson, Johnson, Lafayette, Platte and Ray.

The Mission Project, Inc. is a not-for-profit program designed to enable capable adults with developmental disabilities to live independently in a safe environment with minimal support. For more information, please call Larry Rouse at 913-648-6464.

Missouri Developmental Disabilities Council is a federally-funded, 23-member council appointed by the governor that assists the community to include all people with developmental disabilities in every aspect of life.

Missouri First Steps early intervention program offers coordinated services and assistance to young children with special needs and their families. First Steps is designed for children, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities.

Missouri Developmental Disabilities Resource Center is an information and referral service located at the University of Missouri-Kansas City Institute for Human Development (UMKC-IHD) and funded in part by the Missouri Planning Council on Developmental Disabilities. The MODDRC can help locate needed services and obtain materials on a variety of topics related to developmental disabilities and low incidence disabilities. MODDRC services are available at no cost to any individual, family or organization in Missouri.

Missouri Family to Family connects families and individuals to information and support as well as opportunities to lead and make a difference.

Missouri Protection & Advocacy Services provides legal advocacy and services for children and adults with all types of disabilities and their families on a broad range of issues, including education, employment, guardianship, benefits, and more.

MPACT is a statewide parent training and information center serving all disabilities. They assist parents to effectively advocate for their children's educational rights and services.

Partners in Behavioral Milestones works with children, parents, professionals, and a variety of organizations and institutions to help meet the behavioral needs of their clients. Goals include a working partnership with clients – creating comfortable, functional, and workable solutions to achieve success in meeting their behavioral goals.

Project STAY is a multi-disciplinary team that consists of behavior analysts, a licensed clinical social worker, a certified regular and special education teacher, and a data collector who all address children exhibiting challenging behaviors.

Special Olympics Missouri provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with mental disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes, and the community.

Special Olympics Kansas provides year-round sports training and athletic competition in a variety of Olympic-type sports for individuals with intellectual disabilities by giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes and the community.

Sunshine Center is an early childhood education center specializing in services for children with disabilities. At Sunshine Center each family and child has the advantage of working with an interdisciplinary team that includes early childhood educators, special educators, speech, physical and occupational therapists, a registered nurse and a social worker. Recognizing that each situation is unique, our team involves the family in the process to meet the changing needs of each child. Located in Independence, Missouri we serve families throughout the metropolitan area. We welcome children with Down syndrome.

Think College is designed to share what is currently going on, provide resources and strategies, let you know about training events, and give you ways to talk to others. The information is for transition aged students as well as adults attending or planning for college. It provides resources and tools for students, families, and professionals.

NATIONAL RESOURCES

National Down Syndrome Congress (NDSC) is a not-for-profit organization founded in 1973. The purpose of the NDSC is to promote the interests of persons with Down syndrome and their families through advocacy, public awareness and information dissemination on all aspects of Down syndrome. The NDSC works to empower its members and all persons with Down syndrome by creating a national climate in which all persons will recognize and embrace the value and dignity of persons with Down syndrome.

National Down Syndrome Society (NDSS) is the largest non-governmental supporter of Down syndrome research in the United States. NDSS continues to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. NDSS distributes timely and informative materials, encourages and supports the activities of local parent support groups, sponsors conferences and scientific symposia and undertakes major advocacy efforts—all to increase awareness and acceptance of people with Down syndrome. The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

Down Syndrome Education USA is a leading nonprofit dedicated to raising levels of educational achievement among children with Down syndrome. We are at the forefront of developmental and educational research and evidence-based services improving outcomes for children with Down syndrome.

Down Syndrome Information Network offers a range of information resources and online services to the international Down syndrome community. It aims to provide information and services for families, careers, professionals and researchers worldwide. The Web site has over 1,000 pages of information, equivalent to at least 6,000 printed pages.

Down Syndrome: Health Issues is a Web site full of helpful articles regarding medically related topics related to Down syndrome. The site is authored by Len Leshin, M.D., F.A.A.P. who, in addition to offering general pediatric care, is a member of the Down Syndrome Medical Interest Group and is the father of a child with Down syndrome. The site includes printable record sheets based on Down Syndrome Health Care Guidelines. This is one of the most comprehensive, down-to-earth sites regarding Down syndrome on the Web.

Down Syndrome Medical Interest Group USA is a leader in the advancement of knowledge and understanding of Down syndrome. We are a multidisciplinary group of professionals in the field of Down syndrome working together to:

establish evidence-based standards of care.

engage in clinical research about Downsyndrome

support the development of Down Syndrome clinics.

provide state-of-the-art information to others who are entrusted with the care of individuals with down syndrome.

Band of Angels celebrates children with Down syndrome and supports them in reaching their full potential, beginning with providing accurate and positive information about Down syndrome at diagnosis. Visit the Band of Angels website to purchase inspirational gifts and products related to Down syndrome.

Flourish Network is a non-profit, online network for parents of children with Down syndrome. Parents can ask a question, write a journal, and get access to the latest information. Our mission is to support children with special needs by helping parents become connected, informed, and poised to advocate for an environment that is fully supportive and inclusive of their children.

MetDESK’s mission is to help families plan for the future of their children or other dependents with special needs, including preserving government benefits and providing insurance and other financial solutions which can help provide lifetime quality care. The planning process begins with a complete review of your dependent’s needs, future care plans, assessment of government benefit eligibility, and finally a review of your family’s current financial and legal plans. Critical areas that must be addressed are: 1. Government benefit eligibility requirements for Supplemental Security Income SSI and Medicaid 2. Types of special needs trusts and knowing which are right for you 3. Guardianship, Conservatorship and Client Self-Determination and Empowerment Issues 4. Appropriate funding vehicles – including life insurance, to help guarantee your child’s future quality of life.

Research Down Syndrome is a non-profit foundation that supports Down syndrome cognitive research, an area that in the last 5 years has experienced great advances towards developing biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome.

Disability News Blog: More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges. Join journalist Patricia E. Bauer, mother to an adult daughter who has Down syndrome, as she sifts through current news and commentary, bringing you the best information about what's happening now and what it may mean for you and your loved ones.

Moms4Moms is a website to bring special needs moms together via cyberspace, no matter where their physical space may be. Log on to and be refreshed and inspired, even if it’s a five minute break in your day. Nurture yourself!

INTERNATIONAL RESOURCES

Down Syndrome Education International is a leading international charity dedicated to raising levels of educational achievement among children with Down syndrome. We have been at the forefront of developmental and educational research and evidence-based services improving outcomes for children with Down syndrome for over 30 years.

Down Syndrome International is a UK based international charity, comprising a membership of individuals and organisations from all over the World, committed to ensuring quality of life and human rights for all people with Down syndrome.

Financial Planning Resources

Mutual of Omaha - Comprehensive financial planning for families with special needs individuals. The program specializes in the creation and protection of family assets of families with individuals with special needs.

Sound Stewardship - At Sound Stewardship®, our mission is to help our clients achieve their goals and make a meaningful impact with their wealth. We do that by understanding your needs, creating solutions, and inspiring results. We enjoy long-lasting relationships with our clients as we come alongside them to identify where they are today and where they want to go from here.

Special Needs Planing Center - was formed specifically to work with families who have children with special needs. The firm was created out of the need for a comprehensive planning service which would assist families in coordinating their legal and financial planning with the intent of preserving government benefits such as Social Security.